Cancer patients' decisions about discussing Internet information with their doctors

Abstract

Objective: To explore cancer patients' and caregivers' decisions regarding whether to discuss cancer-related information they found on the Internet with their doctors. Methods: 238 participants (cancer patients and caregivers) from three online cancer communities responded to a survey about their experiences finding information on the Internet about their cancer and their reasons for discussing or not discussing that information with their doctors. The reasons were coded into mutually exclusive categories. Results: Participants most frequently reported discussing information in order to be proactive in improving their health. Other reasons included appealing to the doctor as expert, wanting to become more educated, meeting a psychological or coping need, and checking up on or testing the doctor. Of the participants, caregivers were more likely than patients to cite checking up on or testing the doctor as a reason for discussing Internet information. Sixty-two percent of participants reported sometimes or never talking about Internet information that they thought was important with their doctors. Across all participants, the most frequently reported reasons for not talking about Internet information were attributions about the information and systems-related reasons. Participants who reported information attribution as a reason for not discussing it with their doctors had higher overall comfort levels with these types of discussions. Conclusions: Many factors influence cancer patients' and caregivers' decisions about discussing Internet information with their doctors. The coherence of the reasons across the communities in this study and in other studies suggests that this typology of reasons is both thorough and valid. Copyright © 2009 John Wiley & Sons, Ltd.